May 27, 2010

A DAY TO REMEMBER!

We woke this morning to quite a surprise, and it was just what the doctor ordered. Literally. We almost had to pinch ourselves to see if it were really true! Garrett's cardio team decided that he needed a break. They informed him that he would have to go through another round of plasmapheresis plus another one-hour infusion, then if he were feeling ok, they'd let him go to the ball game! Unbelievable!!

Blood tests this morning showed that his electrolyte levels were still a little off, but much better than yesterday. Garrett was feeling better this morning and he was motivated now to stay feeling better for the day. The doctors told us that they conferred and felt that Garrett's morale had taken too many hits lately. In their combined opinion, the benefits of waiting another day for more infusions and having a day away outweighed the risks. It was a beautiful day and if we handled it properly, a trip to Coors Field would be not much different than taking him outside on the hospital lawn for some fresh air.

By 2pm Garrett was done with all his work for the day and they removed the neck line. They put a pressure bandage on the wound, wrapped up the IV in his arm (because we’ll need it again tomorrow) and after another dose of electrolytes gave us an R&R pass for the day. They gave us a "to do" list to ensure a safe day, made sure we had all the emergency phone numbers we needed, and sent us on our way. We put him in a wheelchair, mask and his Rockies jersey and headed for the park. We didn’t get there until the bottom of the 6th inning, but as it turns out that was about perfect. He looked pretty rough, but you couldn't knock the smile off of his face with a sledge hammer.

The ushers hid the wheelchair and I helped him down the stairs to our magical location. After sterilizing the seats, he got to see the 7th and 8th from behind home plate, but by then the sun had taken his steam. We moved into the shade for the top of the 9th and the game was over. It was a short game for us but it did more for his self-esteem than anything has lately. Having this come one day after his buddy, former Major League great Tom Urbani came to visit him and he’s been in hog heaven today.

Here comes the icing on the cake. They let Garrett stay with us at the motel tonight! We’re close to the hospital so they’re ok with it. This is the first time all of us have been in the same place, all by ourselves, since this leg of the journey began at the first of April. Happiness abounds tonight.

Tell me God doesn’t answer the prayers of wounded warriors! Just yesterday we were praying for a little tranquility in Garrett’s life and were amazed by this tremendous gift the doctors let us have today. Tomorrow brings another day of work at the hospital, but we’ll all be a little more rested and rejuvenated. We don’t have to be there until 9am, but Garrett will have to undergo about 8 hours of infusions with a new med. It’ll be a tough day, but we’re more ready for it now.

I’m closing tonight with a scripture passage put on Garrett’s hospital wall by one of his nurses. Today, it read so true, to so many.

“Let your light so shine before men, that they may see your good works and glorify your Father in Heaven. “ Matt 5:16

We will continue to try our best to do just that.

God bless,

JD

May 26, 2010

Well, I guess I’m just not sure what to write lately. It seems that every time I jot a note about Garrett feeling better, within hours he feels worse. When I write that he’s feeling tough, he then proves me wrong by finding a burst of energy. Today was no different. Garrett had little energy today and was pretty melancholy and discouraged most of the day. One of his IVs was plugging up, so they had to have two more finger pokes just to draw blood for testing. We’re praying they won’t have to start another IV.

Garrett had a pretty tough night last night and woke this morning feeling very tough. His face is puffy from the disease and the treatments and his whole body aches. The little cowboy tries really hard to stay positive and feel good, but the apprehension he’s feeling about his immediate and distant future is pretty consuming. It would be hard enough for him under normal circumstances, but when he is tired and sick it gets magnified. He’s been having irregular heartbeats the past 24 hours that are different than what he’s felt before and they scare him. At one point he told me “daddy, I’m sorry I’m sad today. I’m trying to stay happy because I know what happens has to happen”. Y’know what? He’s earned the right to feel that way for a while. He asked his mommy to pray with him several times this evening, asking Jesus to make him better. When I talked to her at bedtime, she tearfully told me that it’s hard for her to understand right now…”he just doesn’t deserve any of this.” She’s right, but we will continue to trust in God’s perfect plan. We try to keep an honest perspective because while we're fighting a tough fight, in this hospital it is common to find folks who don't have near the blessings that we've been given.

Blood tests today show that his electrolytes are out of whack so they gave him a couple doses through the evening to help. These electrolyte disturbances primarily involve abnormalities in the levels of sodium, potassium, and calcium. While potentially serious if gone un-corrected, it is not surprising because of the oil changes he’s undergoing. Pulling the old plasma out of his system not only gets rid of the bad things, it also removes good stuff, too.

We did get a nice interruption part way through the day when some folks from out of town dropped in to bring us gifts and just pray with us a while. A very close friend of ours from Oklahoma also came all the way up here, too, just to offer support and be here today. These visits were timed perfectly and Garrett definitely cheered up and felt better for a while.

Tomorrow is a pretty large day for our warrior. Garrett has a 2 ½ hour plasmapheresis procedure starting at 7am, followed by 6 + more hours of anti-rejection infusions. But it’s supposed to be a beautiful day outside and we have lots of new movies to watch, so that will help take away some of the blues.

I can’t write much more tonight because I’m tired and need to re-charge the system. Kathy’s taking the night shift and I’m at the hotel with Jessi. We decided to get a room about 10 minutes away because true rest is rare at the hospital. We’re taking shifts so we can keep up our strength for him and for God. I’ve included a couple of photos, not to shock, but just to show you how sick our little guy is right now and how glorifying it will be to see a happy, healthy little boy again.

We deeply appreciate the prayers, intentions and love sent to Garrett. I’m asking that you continue to hold him up to our Lord in prayer and ask for a little tranquility in his mind and heart. His journey has many more miles to go.

JD

May 25, 2010

Today, we got more of them than they got of us. Garrett had a really rough night of last, but mercifully today was better. He underwent another round of plasmapheresis and another dose of anti-rejection infusion without any problems. Although extremely tired and still very uncomfortable, he stayed in good spirits. He wore a Nike arm band today that Chris Thomas, his Air Force buddy, gave him after the Armed Forces Bowl. He said it helps him be tough like Chris.

This afternoon after the oil change, he asked to go for a walk. Said his rear end was getting sore. Geez, I don’t know how he lays in that prison of a bed as long as he does without complaining. We got permission to mask him up and go on a little expedition on the floor, but he didn’t have much strength. We ended up getting a wheel chair after about 100 yards and Jessi pushed him around a while.

We came up with an ingenious solution to the 4-6 inches of lumen connections sticking out of his neck. They tend to bend over and hang out, catching on anything, and this obviously causes him concern and discomfort. So before we took our trip around the floor, I took some coban, which is like elastic vet-wrap tape. I made a sort of Rambo-like head band. It holds the lumen ports against his head so they don’t bounce around. After putting the mask on, he looked like a diminutive bandit heading out to rob a 7-11.

We’re hoping that tomorrow or Thursday we can make a conference call of sorts to his classmates. It’s their last week of school and we initially had planned to surprise him with a day trip home to see his friends, from a distance of course. Following that, we had tickets to the Rockies game for this Thursday’s matinee. They were a gift and were right behind home plate. Well it’s pretty certain we’re not going to make either of those, so at least we want him to be able to say “hi” to the kids at school one last time before summer. Hopefully he’ll get the chance to see his buddies before too long and just be a little boy again.

He’s been resting well tonight so far, but gave me a bit of a shock when his alarms went off about midnight. His pulse rate went way down into the high 70’s and his respirations were down to 4-5 per minute! Then he got a little fussy and was obviously having a nightmare again. His vitals suddenly shot up to over 120 bpm with 19 respirations. After a little while he settled, but for a few minutes my own heart got to beating pretty fast. Those bad dreams must really be something!

I had another friend ask how we try to keep a positive attitude during the tough times. It isn't always easy, nor are we always smiling. But it's the big picture that counts. During my “down time” I’ve been reading “Lone Survivor” by Marcus Luttrell, a retired Navy S.E.A.L. who recounts his harrowing battle in Afghanistan in 2005. It is the worst loss of life for the S.E.A.L.s ever, and yet describes a personal triumph of monumental proportions. It is a must read for anyone who wants to know what really happens over there and what men are capable of enduring when they refuse to quit. The “never-say-die” mind-set of these heroes is awesome. I find myself reading all kinds of books throughout the year, but tend predominantly toward true stories of valor and achievement. They inspire and help me to keep my focus and remind me that battles are won or lost based on faith and attitude.

We try to surround Garrett with positive thoughts and examples. We encourage him to seek role-models who display behavior that demonstrates their faith in God, willingness to first learn to serve others and who drive-on through pain and sometimes seemingly insurmountable odds, to honorable victory. We can provide the information but that decisive, stubborn and competitive fortitude has to come from within. I think we’d all agree that this boy has it.

Have a blessed day and don’t forget to fight the good fight!

JD

May 24, 2010

Today was a tough one. After a relatively uneventful night, Garrett woke up to doctors in the room preparing us for the day’s events. Unfortunately, talk is cheap and it’s hard to sugar coat the angst, pain, excitement, fear and gremlins that lay ahead.

I don’t know if it will help, but I’ll try to explain the procedure and what it is intended to do. A two-hour surgical procedure was conducted to place a main-line jugular vein double-lumen central venous catheter in Garrett’s neck, just below his ear. They sew it in place to keep it from being compromised and cover the incision with a large gauze pad and a thin, clear tape-like protective guard. Two big ports are available outside of the skin and these are used for the plasmapheresis. For the 25th time, I held his hand, took his first tear and kissed his forehead until he fell asleep.

Sometime this afternoon, the oil change crew came in with three large carts. One held a computer terminal, another was a crash-cart and the third was the machine itself. It kind of looks like a dialysis machine on steroids. The plasmapheresis machine reminded me of something out of “Young Doctor Frankenstein”. It’s used to separate the blood platelets from the plasma. When a person has autoantibody rejection, the bad stuff attaches to the plasma. By removing the bad plasma and replacing it with good plasma substitute, the hope is that if done enough times we can remove the anti-bodies that are hurting Garrett’s heart. About .00004% of the world’s population will undergo a similar treatment.

One of the lumen ports draws the blood out of Garrett, through a clear filter and into the machine. It works its way down into a large impeller spinning at about 1465 rpm. As the plasma is pulled from the blood cells, it is put into a container. The blood then is mixed with the replacement plasma surrogate and sent through another filter to them mix with some other key ingredients and into Garrett via the other tube. 130% of the blood is “cleaned” this way, or one and one-third times. This will happen four times over as many days.

About 4” of tubing about the size of a child’s juice straw extend out of his neck and catches on everything. He has trouble moving his neck around without discomfort and is afraid he will accidentally pull it out during the night. The biggest risk to the site, quite frankly, is blockage or infection.

The first round didn’t go flawlessly, but did get done. The lines blocked with coagulation a couple of times and one of the lines got kinked and stopped the flow. One blockage took nearly 30 minutes to clear, with Garrett holding his neck at a 30 degree angle while they worked to clear it. It was dang tough to watch and he was plenty played out and cranky by the end of the day, but he earned it. He was running a temp by the time it was done though, and that’s a little worrisome.

Tomorrow will resume more anti-rejection infusion through the normal I.V. in his arm, and the second round of plasmapheresis will take place at some point along the way. It’s not going to be an easy few days, as the process requires a lot of lying in bed not doing anything and being uncomfortable and scared. But we have to hold onto the blessings that we learned on Friday last. The coronary arteries looked great! Coronary Artery Disease of the Transplanted Heart is irreversible. What we’re fighting now is not.

Garrett got a visit from his "cousins" Lorin and Maggie today. We love them so much. The nurses Garrett had today were also outstanding and truly helped his mind set. When he got back from the surgical procedure, his room had been done up in pictures of bull riders and biblical expressions. On the outside of his door were two printed sheets. One displayed a photo of a PBR buckle that had the inscription “Cowboy Up”. The other simply said “Cowboy Up or don’t come in”. That pretty much says it all. Enter with a positive attitude or don’t drop by. We cannot afford to allow the poison of doubt enter the room.

Tomorrow’s a new day with new adventures and opportunities for victory. Garrett and I talked about this for a while tonight. It may not seem all that obvious right now, but God still has control with His awesome mercy and love. Somehow the birds will wake up singing outside and we might as well join them.

Psalm 3:5 - I laid me down and slept; I awaked; for the LORD sustained me.


JD

May 24, 2010 - Game On!

We have settled in for night two in the Tactical Operations Center, tour two, midnight shift. Area of operations: Cardiac Unit, The Children’s Hospital.

Our little gladiator had a relatively good day. He was able to eat a little breakfast, more for dinner and several tacos for supper. Everything stayed down, and that was a blessing. A few visits from friends and family today helped keep his mind from too much focus on the situation, and this too was a blessing. We took a little walk outside but he petered out pretty quick. But it was a beautiful day and the sunshine and fresh air was great for the soul.

One of Garrett’s surrogate sets of grandparents showed up this morning with good coffee, bagels and fruit. It was one of the best breakfast’s I’ve ever had. After Kathy graciously took the first watch last night I got some sleep for the first time in a couple of days. Sometimes it’s easy to forget how a few hours of uninterrupted sleep can help recharge the batteries. I’ve got it tonight and she and Jessi are across the hall in a family sleep room.

A very special gift today came in the form of our blessed Greenwood family. They really cheered Garrett up. During the week of the second anniversary of Nicholas going to be with Jesus, they put their own pain aside and reached out to us. We’re more grateful than I can express. I'm quite sure one of the reasons God chose Nick, is because He knows the incredible love this family has for others. They arrived this afternoon bearing a bouquet of flowers with a butterfly. The butterfly has a very significant role in this story and I will explain that sometime down the road, but suffice to say we are surrounded by angels tonight.

We also got a visit from one of Garrett’s very best friends in the world. He brought the tacos, which is Garrett’s favorite food. Best buddies always know that kind of stuff. Just the ability to laugh and joke around with friends probably did more for him in a short time than all of the medicine did all day.

We also learned today of another little 8 year old boy who just got his second heart, almost identically to Garrett’s situation a few years ago. The family is petrified and we have given our blessing for the family to visit with us. We can’t feel their pain, but we can sure come close. If we can do anything to help them understand the road, we will. Please keep them in your prayers.

The transplant team explained a little further today what is most likely happening right now. The rejection he’s fighting is still the same one that brought us here in early April. The first round of infusion definitely knocked it down, but not out. It slowly festered undetected until the biopsy. That procedure was enough stress on Garrett’s body for it to show its ugly face in earnest again. The operational plan is not completely set, but we have a pretty good idea of the mission.

Most likely Garrett will undergo yet another surgical procedure in the morning to put a large straight-line tube in his neck that will facilitate at least two separate chemo-type infusions and possibly actual chemo. It will also be used for the plasmaferesis. They also related that it may even take a third try to make this happen, and he will most likely have to have another biopsy in a couple of months.

Garrett is plenty scared right now and said to me tonight, “I don’t even remember what my home looks like. I just want to go home.” “Daddy, why do I have to get sick in order to get better?” “Do you think Jesus is trying to send a message?” Without a doubt Jesus is sending a message. He knows what is best and is obviously using Garrett for His glory. I assured him that Jesus is not mad at him, and he has done nothing to deserve any of this. He is actually very special because God entrusts him with such a powerful mission.

He’s resting now. He was feeling a little poorly tonight, so I’m glad he seems to be sleeping quietly. As I sit here watching him doze, I thought of Ret. Army Lt.Gen. Hal Moore’s number one leadership principle – “Three strikes and you are not out. There is always one more thing you can do.” That is where we are right now. There will always be one more thing, and after that, one more. We love and ache for him so very much it's as if a sword is being thrust through us as well. Watching your child, day after day hurting and scared tears at the very fibre of your being. The temptation to mope and brood is so strong, but we will not weaken, nor will we display anything but a positive attitude. Anything less is inviting failure and complete victory is not optional. There is no kidding around about this one. We are in a battle and it’s game-on.

Tomorrow is a new day. It will try to have us be full of trepidation, but we will arm ourselves with the power of God and the warrior spirit of one bullhide tough little cowboy. He may have scored 99pts on Bodacious the other day, but now he's pulling his rope on Mossy Oak Mudslinger. We will continue to Cowboy Up. He does.

End your day on your knees, and I promise you’ll land on your feet in the morning.
God bless you.


JD